Driving

One of the enormous benefits of being on the waiting list for an autism assessment is that everyone has stopped nagging me about driving.

I learnt to drive at 17 in a little manual-gearbox Vauxhall Nova – a fairly standard experience for British teenagers. What wasn’t typical was how many lessons I needed to learn. I have forgotten the actual number but believe it was upwards of 40. Everyone else* only needed 20ish lessons.

My inability to learn how to drive was the subject of much discussion among my classmates and my parents’ friends. Obviously I must have had a bad driving instructor because, and I quote, “That’s not right, someone your age shouldn’t take that long.”

Now I don’t know if he was a bad or good instructor, but he said something funny (as in peculiar) that I have been reminded of recently. I spent my teenage years living in the Cambridgeshire Fens and learnt to drive there. My driving instructor taught people from all over the area, including Cambridge University Dons. My driving instructor explained that I reminded him very much of some of them. He had noticed that many of these Dons, despite being very good academically, for whatever reason the “normal” life-skills that came so easily to people less academically able alluded them and they found that learning to drive was immensely difficult. My driving instructor told me of one particular Don that eventually gave up driving altogether and continued to cycle everywhere – however this was not always successful as his absentmindness, head on “another planet” and lack of executive functioning meant that he sometimes forgot whether he had cycled or walked to work and would leave his bike attached to some random Cambridge lamppost until he got home and found his bike missing.

Eventually I took my driving test and passed the test – first time I might add. But I rarely feel comfortable driving. I find it all hugely anxiety provoking. And generally I only drive on roads close to my home that I know well. And preferably quiet country lanes rather than busy dual carriage-ways and roundabouts and never motorways.

* i.e. neurotypicals …

Work

Autistic people have a shockingly low rate of employment. Recent UK statistics from no less a source than the British government report that only 22% of British autistics have any kind of employment. Other research suggests that as few as 16% of autistic people are in full-time employment – and I’m not one of them.

In fact, until my interview with the Open University last summer (where I disclosed having ongoing mental health issues and that I am currently awaiting an autism assessment), I hadn’t been offered a job as a consequence of an interview since 1997.

1997!!!!!

Thank God I have the world’s nicest husband who doesn’t mind supporting me when I’m having a rough month financially. Thank God I can earn money from freelancing so that people who don’t want to be around me face-to-face can stomach hiring me at a distance.

I jest. But there’s no way to hide how demoralising it is to be continually rejected for paid employment for over 20 years.

I try. I really try. I shower, I wear clean clothes, I smile, I attempt to copy neurotypical eye contact without looking like a creepy serial killer or a liar (I have no idea if I pull it off). Of course the anxiety gives me headaches, I forget the answer to questions I know, I flail and I probably ‘mask’ so hard I come off as inauthentic. I also (I think completely understandably) lack confidence.

University

This post comes with a trigger warning for discussion of suicidal ideation.

I’ve mentioned my mental health issues during university elsewhere, including self-harming and a suicide attempt elsewhere so I won’t repeat them here. Instead I’m going to talk about my other difficulties at university and the problems the higher education system has with dealing with autistic students in general. Emotionally, this is a really difficult post for me to write and my alexithymia isn’t helping me put it into words so I’m afraid it’s more cold, clinical and factual than I would like but I don’t know how to relate it otherwise. And, after years of believing I was the only one who experienced university this way, it turns out not to be true; that my experience is not uncommon for autistic students. So I’m doing my level best to share it here in the hope that it is helpful to someone else.

Not unsurprisingly given the awful state of my mental health at university, my grades tanked as I struggled with what I would now know to be a form of stress-induced sensory fragmentation. Autistics tend to be bottom-up thinkers; it helps enormously with my job as a professional proofreader, but it means that piecing things together (i.e. seeing the wood for the trees) is harder for me than for a neurotypical person; at my lowest I would sit down to read a textbook and be unable to read, only seeing individual letters and words and not being able to construct coherent sentences. At the time though, I didn’t know what was has happening to me or why, as far as I could tell I was quietly going mad and nobody seemed to care.

If you can believe it, my deficits in social communication meant the situation deteriorated even further in my final year. I somehow managed to get my heart broken. I had a crush I had assumed was unrequited. It wasn’t. I didn’t handle it well and he assumed my actions were rejections (with hindsight it was a comedy of errors so tragically farcical it is clear to me now that it was a giant flashing neon sign of my autism). If that in itself was not bad enough, despite my being severely depressed, everyone I knew from university decided I must be toxic and that it was best to cut me off and treat me as if I was dead to them.

So I graduated with a crap degree, was ostracised by all my “friends”, and left with physical, mental and emotional scarring.

In all honesty, I don’t give a damn about Imperial’s reputation, I just wish I’d never gone to university at all. Even to this day, I don’t believe I’m cut out for anything other than distance learning. I just wish I’d known that from the start. I’d have spent a lot less time turning all my pain inwards and mentally beating myself up for being a hateful, lazy loser.

Most perversely of all, in this fucked-up excuse for a world that we live in, I get to be a “success story”. Less than 40% of autistic students complete their degrees. Imagine the (rightful) outcry there would be if universities were able let down their BAME students as badly. They only get away with such shameful behaviour because they’ve paid too much attention to “TV Autism” in the guise of neurotypical actors playing two-dimensional characters like Sheldon Cooper and convinced themselves that university is some kind of utopia for autistic students – when the stark truth is it couldn’t be further from one. Studies suggest it’s not uncommon for autistic students to experience university as “traumatic”. Like most autistic students, the cards were stacked against me from the start. And nobody told me. They just gaslighted me into believing that I was a bad person, a failure, a waste of oxygen.

And now my children are teenagers. So I get to worry about whether they will kill themselves at university like I tried to. Ever since they were old enough to have these discussions I’ve told them that they are under no pressure to go to university, that they must put their mental health first and drop out if their universities do not support them, and that they need to be prepared to ask difficult questions of the academic staff and not blithely accept any pat answers about student wellbeing.

Additionally, because the waiting list for assessment is too long, I find myself having to pay £2000 for a private assessment for my daughter so that she can know before she begins degree-level studies and not languish on the 4-year long NHS waiting list like I am. I would rather die than let her go off to university as a potentially undiagnosed autist and suffer the way I did. But I am so incredibly pissed off that this is a choice denied to poorer families.

And neurotypicals think *I* lack empathy…..

It was my jeans that made me do it…

No, autism isn’t caused by the MMR or any other vaccine. Despite many (neurotypical) parents noticing changes to their autistic children’s expected behaviour paths at around 12-15 months – exactly the time that they receive their MMR. In fact, current studies suggest between 61-91% heritability and therefore a very strong genetic component.

My mother has always told me I was a grumpy baby. Even before a year old, I would scowl at strangers who had peeked into my pram and make these grown adults recoil. As I told my GP when I finally worked out that I had many autistic traits and related this story to him – “I’ve been inadvertently alienating people my whole life.”

Since autism is largely genetic, it often runs in families. So perhaps my spinster great-aunt was autistic and possibly too, her confirmed bachelor brother whose bedroom walls were lined with his handmade model trains. With hindsight, my mother can certainly recognise autistic traits in their sibling, my grandmother. Both of my mother’s two sisters had epilepsy from childhood, the eldest of which, Jeanette, died at 5 of sepsis – but apparently there was always something “not right” with her beyond her epilepsy. (By the way, the genetic links between autism and epilepsy run both ways and I’ve seen research papers suggesting that because the link is so strong, all unaffected siblings of epileptic children should be routinely screened for autism.) I know that Jeanette could walk and talk and in the only photograph of her that I’ve seen, she is a pretty little blonde girl – with no obvious signs of disability.

Lest you think this is all coming from my mother’s side: my father is a retired engineer. And he’s ambidextrous, writing with his left-hand but playing guitars right-handed and playing racquet sports and golf with both hands (his golf bag includes both left and right clubs). Both technical careers and mixed-handedness are associated with increased likelihood of ASD diagnosis. In fact, if you met my parents you’d probably think he was the more obvious potential-autist with his engineering “toys” and his plane-spotting (for much of my early childhood, every blinking Sunday morning was spent at Heathrow Airport to give my mother a break – he thinks I have forgotten – I have not) and his multiple telescopes and his odd thinking-style (which is very much like mine – much to my brothers’ amusement and frustration – for instance, when playing Just One my father’s suggested words are so out of left-field, i.e. displaying associative rather than linear thinking, nobody can get them except me).

In summary, it looks increasingly like I am the product of assortative mating between two people who, if not autistic themselves, certainly show signs of having the Broad Autistic Phenotype.

Sensitivities

The following are all sensitivities that I noticed and attempted to mitigate before I realised I had high levels of autistic traits:

  • Light: I wear dark sunglasses from May to September as bright sunlight has always triggered headaches.
  • Sound: I wear special swimmers’ earplugs while showering otherwise I get terrible headaches. I always listen to my music too loud.
  • Taste: As a child I was a “fussy eater”. I refused to eat ice cream out of a bowl as it gave me “brain freeze”. I refused to eat jelly from anywhere but the very centre of the dish as there would be a hard ‘rind’ from where the jelly met the container. I wouldn’t eat the rind in marmalade. I wouldn’t eat the fruit in jam. When eating a dish I would eat all the foods of one type before moving on to the next (e.g. all the meat, then all the roast potatoes, then all the stuffing and then all the carrots). I wouldn’t mix up the foods of a meal.
  • Smell: I haven’t noticed any difference to my sense of smell compared to other people. I mean I hold my nose when walking past branches of Lush because the smell gives me a headache but that’s not unusual.
  • Touch: I hate scratchy fabrics. I feel all the clothes in the shop that I might buy to check they’re made of something appropriate to actually wear. Shockingly high numbers of clothes are made of hideous synthetics that make me want to vomit. As a child all children’s slippers were lined in something nasty and nylon that made my skin crawl – even today I hate socks and am fairly sure they (along with bras) are a sign of the Fall and were invented by Satan. My mother once bought me a blue woollen dress with a high neck and long sleeves – it made my body undergo a whole body itch. I think I wore it twice because people liked how nice it “looked” – but it was an instrument of torture. My husband has an AQ-50 of just 7 and has a habit of coming up behind me and touching me too lightly. This has the unfortunate effect of making me flinch and (usually) slapping him. My son has a much more respectable AQ-50 of 31 and gives bear hugs, which do not invoke flight or fight. Autistic people tend to like wear compression vests (one brand is even called Bear Hug) and weighted blankets.
  • Pain: As a child the school dinner ladies used to call me ‘the little soldier’ as I never cried when I fell and grazed my knees – which was often on account of my clumsiness (another autistic trait). Another thing that I am careful not to mention around other women is (in common with a lot of autistic women) that I don’t find labour painful – honestly. I had my second child at home in a planned homebirth. I didn’t use any pain relief apart from floating in a jumbo paddling pool. In fact I warned my midwife not to push drugs on me. During my first pregnancy I tried the ‘gas and air’ (nitrous oxide) because the midwife wouldn’t stop going on about it and I wanted to shut her up. I wasn’t in pain so I got high! Unfortunately, they eventually twigged what I was up to and took it off me. Autistic people often don’t experience pain in the same way that a neurotypical person would.

It should be clear that for some things I am hypersensitive and yet for others I am hyposensitive. My pattern of sensitivities is unique to me, some autistic people are hypersensitive to pain for example. This is where the idea of the “spectrum” comes from, not from the idea that classic autists are “low functioning” and I’m at the other end with my “high functioning” version. Which is so many levels of offensive to non-speaking folks and minimises the struggles people like me have (with our meltdowns and our suicide rate and our inability to hold down a full-time job or be successful at interview or get married).

We need to talk about Morten Harket

One of my many annoying habits is asking my husband if he still loves me or does he want to throw me away yet. I’d always assumed it was just because I’m massively insecure and needy (and indeed I may well be), but sometimes it borders on being mindless repetition, almost like a verbal tic (echolalia? palialia?). I will ask him a second time, literally 5 minutes after asking him a first time. Sometimes the words will come out of my mouth without me realising and the first I know of what I’ve just done is that he’s sighing once again because, well how is he supposed to answer, what answer could he possibly give that would stop me asking again?

Anyway, it was after a recent exasperated response of, “Yes Kate, I was OK this morning but on going out to the bins I’ve changed my mind,” that I fired back with:

But allistic people are fickle. You say what you don’t mean and change your minds constantly. I’ve had the same favourite band since I was 9. I never change my mind about anything. Well unless I was wrong about it to begin with …

It turns out that while autistic boys are more likely to be into space and trains, girls on the spectrum have special interests more in line with the interests of their neurotypical peers – so horses, fairies, unicorns, dolls, celebrities, pop stars. (Clearly as an avid teenage reader of Railway Modeller I was following both the boy and girl path.)

My family are amazed when I demonstrate knowledge of any music other than that produced by a-ha. I’ve always used their music to decompress although when I was a child I wouldn’t have had the language to express what I was doing and why. My brain loves Morten’s angelic, perfectly pitched voice – as someone for whom attention to detail comes naturally that’s incredibly important. I can’t stand to listen to bands like Joy Division whose lead singers sound like the musical equivalent of fingernails down a chalkboard.

But there’s more than that. Even as a child I felt that I could relate to them, that they knew what it was to be a person like me – their songs often speak of being an outsider, an alien, the person who never fitted in, who never belonged. Witness exhibit A:

“And I try and I try and I try
But it never comes out right
Yes, I try and I try and I try
But I never get it right”

And I love that they’re massive nerds who’d much rather discuss philosophy and orchids than the banal topics that interviewers are so keen to talk about. I think my three favourite Norwegians might want to get that looked at…

Mental health

I’ve just left a Zoom conference on Student Mental Health. It was all too triggering for me. I can’t deal with people making dumb allegations about ‘student experience’ that bear no relation to my lived reality. So I’m going to overshare and vent and get it all out here. Buckle up.

This post comes with a trigger warning for discussion of suicide, self-harming and severe depression.

My mental health, in common with most undiagnosed ‘high-functioning’ autistic women, is truly awful and still largely untreated.

I’ve struggled with recurrent depression since I was 16, but been repeatedly told by GPs not to worry about it and to take more warm baths.

At 19 I attempted suicide while a second year undergraduate.

I survived obviously but told no one and received no medical treatment of any kind. I didn’t believe my GP would care. In the first year I had repeatedly tried to tell my university-assigned personal tutor I was struggling but he just told me not to worry about it so I never bothered him again. About two weeks before my suicide attempt my flatmate suggested we have a flat-warming party – I thought this was a really bad idea, after all I was ‘that’ girl, the one who was the only girl who wasn’t invited to classmates’ parties, the one whose friends didn’t attend her parties. By my eighteenth birthday I was burned enough that while my parents wanted to hire a venue and throw me a big birthday party, I refused point blank so they took me to the fish and chips shop instead. Whoop-de-do!

So my flatmate’s ill-advised party went as poorly as I had expected. We had one guest. A gentleman I had not bothered to invite because he had stood me up three times in a row and, while my autistic traits mean I am slow on the uptake when it comes to affairs of the heart, even I knew what that meant. He downed a half of lager and left. My flatmate decided to get wasted and snog the bloke from upstairs. I spent the evening crying in the bathroom. It was my party after all and I was perfectly entitled to cry if I wanted to. My classmates clearly didn’t like me enough to want to spend time with me beyond what they were forced to endure. There was little point in telling them how miserable I felt.

Luckily, about a week after my suicide attempt I burnt myself cooking a ready-made pizza and discovered that physical pain is an effective short-term relief for emotional anguish. I self-harmed on a weekly basis for the rest of my undergraduate degree.

I told no one about the self-harming either. There was a lot of obvious stigmatisation of the ‘attention-seekers’ who self-harmed in the 1990s and I knew enough to know that going to the GP with a self-harming problem and an inability to maintain friendships was going to get me an automatic Borderline Personality Disorder diagnosis, because women couldn’t have autism. I was certain I didn’t have BPD, but couldn’t get medical treatment for my self-harming problem without being lumbered with a diagnosis that didn’t fit me and was treated with contempt by medical professionals.

I wish I could say that self-harming is behind me forever, but I last self-harmed 7 months ago. The truth is it works. Neurotypicals don’t understand, but then they never do and rarely try.

It would be nice if I could express myself through words. But like many autistic people I have alexithymia – something that the few therapists the NHS has allowed me to see have quickly identified. I can do the big ones – I know anger and fear and love and happy and sad. But beyond that. Nothing. My therapists always get me to use a Wheel of Emotions and use my pre-frontal cortex to work out what emotion I am feeling via a process of elimination. It’s all very tiring and why I find talking to other women who only want to discuss their feelings so pointless. We might as well discuss the finer details of paperclips for all I care (paperclips are not a special interest of mine, just so you know).

Like most autistic people, male and female, I suffer from anxiety. I’ve suffered from panic attacks since I was 22. When I was younger they would be stabbing pains in my chest that would wake me up in the night. These days they are attacks of breathlessness that sound for all the world like I am having an asthma attack and frighten my children terribly. My son once tried to call an ambulance because he thought I was dying.

I’m not getting any better. Lots of these things will likely never leave me. Recurrent depression poisons the brain and makes it much more likely you will have repeated episodes. I am very likely to have dementia due to the brain shrinkage caused by my depression. The life expectancy of a non-intellectually disabled autistic person is about 20 years less than a similar neurotypical (i.e. 58 years). There isn’t a lot for me to positive about when I think about my long-term future.

Well that’s a downer, right, and this is why I have (almost) no friends.

Meltdowns

When I told my husband I thought I might be autistic at the start of 2021 he told me to not be so ridiculous because I couldn’t possibly be autistic because I had plenty of empathy. (Don’t worry, we will get to this lack of public understanding about the differences between sociopathic narcissism and autism that means lack of empathy is perceived to be a core trait of both later.)

By the end of the day, after a bit of googling, he had fully accepted that I was autistic – he was more convinced than I was.

What changed his opinion so rapidly?

My meltdowns.

I have always had huge “temper tantrums” or “emotional outbursts”. At school I managed to keep everything bottled up until I got home. At which point I would explode everywhere. My family consider me difficult to live with because of it. After university I went to work at a publishing house that specialised in being the first to market with computer programming manuals. We were constantly checking manuscripts against alpha and beta code, routinely working 100-hour weeks and having our holidays cancelled. The stress was horrendous, and several colleagues were made ill (one book project went so badly it resulted in an editor suffering from a collapsed lung, another book project led to a suicide). With hindsight the work environment was toxic.

It was at this workplace where I met my husband. Needless to say long hours working in highly pressurised circumstances with huge open-plan offices is my idea of hell. I had so many workplace meltdowns I had a reputation. And not a good one. My husband nicknamed me the “small cute violent one”. My colleagues were afraid of me. I was afraid of me. Plus, my rock-bottom self-esteem was continually being damaged by my inability to control myself. Meltdowns are emotionally draining, in and of themselves, without worrying about the perceptions others will now hold of you as a consequence of witnessing your behaviour – adults are supposed to behave like adults and having (autistic) meltdowns is not allowed.

My husband assumed that my meltdowns were merely the result of the high-stress environment. He proposed, we got married. The meltdowns continued.

Not all the time. Not as frequently. But continue they did. Change the plans too many times and I might have a meltdown in Milton Keynes Central railway station (I’ve done that), change the plans one too many times and I might have a meltdown in the High Street at Christmas (I’ve done that). As recently as 2020 my husband angrily hissed at me that he would divorce me if I continued to have childish tantrums in public places.

So when my husband googled what autistic women actually look like, he realised he’d been misunderstanding my actions for the past 22 years. What looked like bad parenting, or manipulative behaviour, or self-centredness was just an overworked brain doing what overworked brains do when their ability to cope has been exceeded.

But my meltdowns are my central fear in going for assessment. When I discovered that I might be autistic I suddenly had an answer to all my problems. In fact, the bow it ties up is so neat, I worry that it’s too easy, too simple. What if this is all some hideous cosmic joke at my expense? What if I’m mistaken? What if I’m not autistic? The reality, if I’m wrong, is too painful to bear. I am just an overgrown, unlikeable, unloveable, spoiled brat and a burden on the whole world.

Your wife is posh isn’t she?

Apparently nobody likes the way their voice sounds. But there’s another reason I always cringe on hearing my voice and like to claim I have a voice for print. My accent is terribly posh. So much so that’s often remarked upon by others. And sadly, I don’t have the background to justify it so I come across to others as having an affectation and being pretentious.

I’d always put this down to moving around a lot as a child. My received pronunciation is merely a consequence of an amalgamation of various regional accents. But I stayed put from the ages of 7-18 in the Fens. I’ve come across others (presumably neurotypical) who moved to a new area much later than 7 and completely lost their previous accents.

So why do I talk the way I do?

Tony Attwood (of The Complete Guide to Asperger’s Syndrome fame) says that it is incredibly common for autistic children to not have the accent of their classmates, a finding backed up by many parents. I’ve read of Australian children talking with US accents despite never living there or knowing any Americans personally – they’ve picked it up from the media they’re consuming.

Reading, GPA and hyperlexia

One of the traits associated with autism is a tendency to take things that other people say literally, which leads to much confusion, embarrassment and humiliation. Hence most of my teachers thought me a dunce for not deducing their implicit but unspoken communication, although at least not all of them thought me wilfully disobedient for not making eye contact (something I discussed with my mother who assured me that it was normal to not make eye contact properly until you had learnt how to do it, as she herself had done as a child) or being unable to have quiet hands during lessons (blogger begins internally screaming).

In the sixth form, my secondary school would bring in former pupils to explain what life was like at university. Much of it was nonsense and only applicable to people studying their course at their university. A lot of it was actively damaging for a young woman who so desperately wanted to find “the place where I belonged” and was promised that university would be some kind of Emerald City (pay no attention to the man behind the curtain).

One other thing stuck with me that needs refuting because it’s not just wrong for possibly-autistic me, it’s wrong for everyone.

“Don’t buy the books,” they said, “the library has them anyway.”

As a first generation student on a very limited budget with no financial support from my parents I gratefully and unthinkingly received this ‘wisdom’.

Only it was yet more nonsense. Because the library didn’t have all the books. In fact even if it did have them, they were probably on loan to someone else. Even these days university libraries are hit and miss, for example, a library may have the ebook but only a license for 5 people to read it at once, and sorry everyone else wants to read it too.

No, the better bit of advice is to read ALL the books. Your GPA will thank you for it. (GPA being your grade point average and hence your marks – US and Australian universities use GPA the way a UK one uses “class”.) Scientific research has consistently shown that the more of your textbook you read, the better your grade. In fact reading beyond merely the required reading is even more beneficial. Now this was a rule I could get behind. When I learnt about this research in the run-up to starting my master’s degree I bought all the required textbooks, all the recommended textbooks, and then used Amazon’s “people who buy this also buy” feature to find and buy even more textbooks. I morphed into Elle Woods studying for her LSAT exams by buying every book on the subject I could get my hands on. (Funnily enough there are pages and pages on the internet written about how the character of Elle displays autistic traits.)

I was an extremely bookish child, who grew up to be a bookish adult who has spent decades earning a living by reading books. Sometimes I even think that some of my best friends are books – they’re always there for me when I need cheering up, or a word of encouragement, they never angrily tell me I’ve done something wrong, or said the wrong thing, or any of the other problems that blight my relationships with living, breathing humans. Reading early, reading at a level far above your chronological age and preferring books over other toys or another failed attempt to interact with other people is considered to be a form of hyperlexia, hyperlexia II, which itself is another trait commonly found in autistic people.